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Accelerating ME/CFS? The NIH Conference Day I: Exhausted Systems, Inflammation And Weirdness

Friday 12 April 2019


From Health Rising:


2019 NIH Conference attendance
The conference room never filled up.

Accelerating ME/CFS? The NIH Conference Day I: Exhausted Systems, Inflammation and Weirdness

By Cort Johnson
April 10, 2019
© 2019 Health Rising.

A Critical Look at the NIH’s Accelerating Research Conference

This chronic fatigue syndrome (ME/CFS) conference was different. Besides the normal goal of bringing researchers together to share their latest results, it had an ulterior motive – getting NIH researchers involved and highlighting the work of the new NIH-funded ME/CFS research centers.

I wasn’t able to get a full picture of the conference. After getting sidelined by a lingering cold halfway across the U.S., I watched the conference from a hotel room in Kansas City. But what I could see suggested the conference didn’t achieve either of its two goals.

While the upper part of the room was fuller, the lower part of the room near the stage never came close to filling up. Many of the questions put to the presenters came from patients, advocates and people with an agenda – not from NIH researchers newly interested in the field.

Plus, perhaps not surprisingly, given how long everything takes with ME/CFS at the NIH, we got precious little from NIH-funded research centers or from the intramural study, and the most interesting talks came from outside researchers.

As a showcase of what the new NIH approach is doing for ME/CFS, then, the conference appeared to be six months or so too early. The NIH, it should be noted, plans these things far in advance, and must have thought things would be further along by now.

This is not to slam the conference organizers. It was a worthy effort and an NIH ME/CFS conference is better than no NIH ME/CFS conference but the failure of the conference to pack the hall with NIH researchers was a pretty stark reminder that, once again, the half measures the NIH is taking on ME/CFS are not going to do it for this field. We have, after all, had NIH conferences, and some small NIH-funded ME/CFS research centers before. If the NIH going to fulfill on NIH Director Francis Collins’s promise to get serious about this disease, it must do more.


Full article…



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